Increase in medication: Hi. I see posts on here from... - NRAS

NRAS

36,432 members45,077 posts

Increase in medication

Bookworm55 profile image
4 Replies

Hi. I see posts on here from people struggling to get doctors to prescribe the treatment they need to control their RA but my situation is almost the opposite.

Background- diagnosed with sero positive RA in Feb 2016 aged 60 after sudden onset of severe joint pain and swelling. Xrays revealed damage to both knees and hand. Prescribed mtx (though never able to tolerate dose higher than 12.5mg - my current dose) and hydroxchloroquine (which was stopped a year ago due to possible eye damage). I also took oral steroids for the first few months.

My current DAS is 4.06, CRP 7.5 and ESR 14 mm.

I have very little pain or swelling day to day- just a bit of stiffness in the mornings in my hands and knees which I put down to the OA damage. Very rarely take painkillers.

At my routine consultant appointment in May the ‘new’ (to me) consultant was very keen to increase my medication. She did feel my joints and when I said they were not really hurting at all she said she thought I was ‘being brave’. I wasn’t!

After realising that it was probably not a good idea to up my mtx (even if by injection) due to my slightly raised liver results (which pre date diagnosis) she suggested adding in either sulfasalazine (consultant doesn’t favour this as much) Humira or baricitinib (olumiant).

She wrote this in letter to my GP - “my feeling is that she needs more aggressive treatment given her sero-positivity and the amount of synovitis I have seen today”

I have an appointment to see her again next Monday to tell her what I want to add.

I must admit that I am still not convinced that I need anything more but obviously am worried about further ‘silent’ damage to my joints.

My GP thinks I should go for the one that is an infusion as this may last longer between doses and , if (big if) I can then come off mtx and reduce the blood tests and monitoring I have at the moment ?(blood tests don’t bother me at all)GP also said that other drugs I’d been suggested were much more expensive than mtx so if the hospital were offering them to me ...........

I do worry about side effects and esp the further suppression of my immune system as I really don’t want lots of infections. Atm I am healthy so wonder if the increased risk is worth it.

On the other hand, I obviously don’t want to find years down the line that my joints have been seriously damaged because the RA had not been sufficiently controlled.

Any thoughts please? All comments welcome now you’ve had the patience to read this far.

Thanks.

Written by
Bookworm55 profile image
Bookworm55
To view profiles and participate in discussions please or .
Read more about...
4 Replies
mccaffs2014 profile image
mccaffs2014

The nras site has loads of information about das scores and ra treatment. You will get useful information before your next conversation with the rheumatologist. My das score was higher than yours before I was considered for biologics. Whatever you decide I hope you remain well.

Bookworm55 profile image
Bookworm55 in reply to mccaffs2014

Thank you. Yes my niece’s RA was far ‘worse’ than mine before she was prescribed biologics.

helixhelix profile image
helixhelix

Hello there, I think you have a thoughtful doctor.

I moved on to biologics in the middle of last year after doing pretty well for 8’ish years on the traditional cocktail of MTX, hydroxy & sulpha. My DAS score was lowish, and I was rarely in pain. However my rheumy was not happy and wanted me to swap. I dithered for a year as I was worried about infections, and the whole manufactured nature of the drugs, etc, etc. Tried increasing my MTX, tried ignoring it.

However, I had neck pain and had an MRI which showed erosion. So basically rheumy told me to stop faffing about. Well it was the best decision I made! I’ve been on them 11 months now, with not so much as a sniffle. And I thought I felt pretty ok before, bit now I realise I didn’t as I feel so much more ‘normal’ now. I now kick myself for not changing sooner!

And its not just joints that you need to worry about, but effects of RA/inflammation on heart, lungs and other organs.

I was offered the infusion, and declined as it’s a bit all or nothing. But that’s not one you mention? So I've gone for an anti-tnf like Humira that has a short half life, so if I do get an infection its out of my body fairly quickly. Baractinib is a pill....

So don’t dismiss the idea out of hand.

Bookworm55 profile image
Bookworm55 in reply to helixhelix

Thank you helixhelix I think this is what I needed to hear. I will certainly discuss things further with the rheumatologist on Monday . As you say, we don’t always know where inflammation is taking place and, on the maxim that we usually regret things we don’t do more than those we do, I will probably go with her advice.

You may also like...

To increase Methotrexate or not advice please

to. When saw consultant recently she suggested I increase dose of Mtx to 20mg weekly as she could...

Overuse of Steroid Medications Can Increase Risk of Certain Infections

Methotrexate Increase

then told me I needed to be \\"put down\\" then said he was joking! He has increased my mtx to...

Medication

worse now but he said no, need to see rheumy again as it's a serous drug and I need liver function...

Process of medication

under control for it keeps me awake at night sometimes for the pain is so bad. He prescribed me...